Radical Vulvectomy

Hi Ex Lancashire Lass 

I'm not a member of this forum so don't know if what you're feeling is normal. However, by responding to you it will 'bump' your post back to the top of the discussion list and I'm sure some forum members will be along soon to share their experiences with you.

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Hi I’m new to forum only had my diagnosis 2 weeks ago so don’t have a plan of action yet but hearing on Wednesday this week. What size of tumour did you have and treatment please?

Hi I’m new to forum only had my diagnosis 2 weeks ago so don’t have a plan of action yet but hearing on Wednesday this week. What size of tumour did you have and treatment

Hello Eileen, so sorry to hear of your diagnosis, and the shock that comes with it.  I am here if you need to discuss anything.  Mine was a wide but shallow skin cancer/melanoma, so had quite an extensive removal, from one side to the other, including clitoris.  The operation successfully removed the cancer and both lymph nodes were clear too.  Have another check up this week so hope all still looks well.at the moment no further treatment was needed, so hope that will still be the case.

you will know more when you go on Wednesday, I will be thinking of you and holding your hand too.  Please feel free to contact me any time you want.  

Hi thanks for replying! My tumour is 3 cm so when the dr gave me the results of the biopsy he said my treatment could be surgery/chem/radio or a combination of. I’m 61 on Wednesday too so I pray I get promising news re mri.

You are welcome, that is what we are here for, helping and supporting.  I hope your MRI results are promising too, especially on your birthday.  I was 73 when diagnosed last year.  

hi Eileen, not been told the size of tumor. was supposed to have wide excision last Thursday but was shunted to 30th cos not enough nuclear people to do the sentinel node removal.was gutted but have had a week in Scotland in my van instead ! I only met the consultant on last Monday who said wle including removal of clitoris, possible vy plasty if needed where clitoris removed and patch of vin lower down also to be removed with sentinel lobes. possible radiotherapy after which I am terrified of . it's a lot to take in at one time and none of the choices are easy. in the extra week I've had it's given me chance to get my head together a bit. I'm ok with the surgery completely no brainer to me . the possibility of lymphoedema or radiation side effects are myain co CERN's but in the end am going to get a load of different perspectives and allow myself to shake it through and decide. I think until I've had te surgery it's like a different future me is on a different path and at he moment normal. me is trotting on. weird wiierd feeling . also decided can't face telling others than a couple of close friends and my kids cos CBA dealing with the same story over and over yet. I do hope your surgeon/ doctor gives you answers and take a list of questions with you. my guy was lovely and took time to answer my list . he did give me blunt answers and some worst case and at the same time optimistic . not sure which it will be and am guessing neither does he until after the op . take care and keep in touch

 please message back if you want to after Wednesday . I didn't know anyone ever who had anything like this so it's all new . there are some fab women on forums who are so supportive and give loads oinfo which is useful . will have fingers crossed on Wednesday for you

Thank you so much Rach for sharing. There just seems to be so much going on with this cancer! Can I ask how you became aware of having ? 

I had some discomfort after menopause 6 years ago so Dr prescribed vagifem over the phone. then had some family stuff, ruptured appendix and a year of bowel shutting down caused by adhesions so discomfort on back burner . rang after COVID and after excruciating embarrassing call again no exam given ovesten with no instructions. used that a while still some pain top left vulvar bug not life changing. got chased for late smear and felt awful pain in 21. nurse said can see sore patch have you talked to dr.daid yes vagifem ovestin and every other vaginal moisturiser so she shrugged and said oh wel done women it's like sandpaper. cried in carpark then plodded on a while . Nov 23 thought Wil give one more go. GP apparent menopause expert said lichen sclerosis ( it's not ) prescribed dermovate we hich was way worse burning awful pain then 2 weeks trimovate. she saw the big bump on my labia and for whatever reason only 4 weeks later said refer to gynse. rang and they sai would be earliest April so paid 200 for private consultation as Nd she pushed for 2 eek biopsy on NHS . not lichen but vulvar cancer. since march biopsy been pretty quick . regret that didn't push more for exam at start but COVID made Dr appointment imposs and even when there with tumor didn't recognise it.

how about you ? it's shocking isn't it